Friday, May 2, 2008

Can't think of a title

I finished the herbs prescribed by my acupuncturist yesterday. They were supposed to be antiviral but they didn't affect me like Olive Leaf Extract did. With OLE I felt a definite herx after 5 days-very fluish, muscle aches, etc... With these herbs I just felt very tired, some mood disturbance or what I like to call bio-emo. It's hard to tell what is the herbs or my new supplements.

Anyway, today I was extremely fatigued. It's hard to describe but I think I felt weak. I got a little worried even as I was laying on the couch.

I've also been having a lot of shoulder ache/pain for the past 4 weeks now. I can put up with a lot of pain but combined with the fatigue it's a bit wearing.

I'm still thinking about valcyte. It's hard to know if it's the right thing to do. I'll be glad when Dr. Montoya presents findings from his study.

I started methylcobalamin injections 4 days ago. Methylcobalamin is a form of B12 that helps with neurological issues. I actually have been injecting myself! Who would have known. The first time was the most difficult. I haven't noticed a difference yet.

I'm also doing mitochondria treatment that I started at my doctor's recommendation on April 19th: 200mg coQ10 twice daily, 500mg acetyl-l-carnitini 3 times daily, resveretal 15mg 3 times daily, and d-ribose 5grams 3 times daily. He said I probably won't notice anything for about one month.

I also started 2.5mg hydrocortisone twice daily on 4/19. It seems to help with the dizziness so it appears like I do have POTS (postural orthostatic tachycardia syndrome). For information regarding POTS a good website is potsplace.com. Another name for POTS is Dysautonomia which is a dysregulation of the autonomic nervous system. This can happen with cfs. I don't consider this to be my primary diagnosis but secondary due to the viral infection. Luckily I've responded to treatment. Feeling dizzy most of the time is not fun.

Today was a hard day. Those thoughts that I'll never get better haunted me but now that it's evening I'm feeling a little better.

I never thought I would be facing an illness like this. Cancer maybe because of my family history but not this. I've been trying to understand why this happened. What did I do. Was it certain health choices I made, was it because I never ate healthy, or I pushed myself, or that I was a very driven person....etc...Whenever these thoughts start taking over I have to slow myself down from self-blame and remember the words the doctor told me when I was diagnosed. He said: "it was nothing you did, this wasn't your fault, it would have happened no matter what." Sometimes I think I try and find the reason why because if I could figure out why it happened then I could figure out how to fix it. It gives me some illusion of control.

As it is now, I don't know what my energy level or weakness or lightheadness or muscle aches, or whatever other symptom decides to show up that day will be present. I can't count on whether or not I'll be able to walk the 2 blocks to the post office to mail my books. I don't know what I'll be able to accomplish on any given day. And sometimes my heart breaks with grief at how my life has changed. And more often than not my heart breaks at how much this affects my sweetie. This illness is not for the faint of heart.

I find it even more strange to remember that I was finishing writing my dissertation just 18 months ago.

I do love spring/summer and enjoy seeing the flowers blooming. I also love hearing the birds sing in the morning. I also love it when my kitty snuggles up to me early in the morning and puts her nose against mine. Life is really about moments. This feels like a weird, rambling post but that's okay.

2 comments:

I read that blog and .... it was looking at myself in the mirror. I was diagnosed around August 03... so I'm going on almost 5 years of misery.How long have you had CFS? And how long ago did they diagnose (just this past November 07? What triggered the symptoms? Would you mind if I continue tuned-in to your blog and exchanging stories of what works/helps and what doesn't?I'd love to join you in you war against CFS. Lourdes

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About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help